betrayal, anger, terror, revenge

Betrayal, anger, terror, revenge.... seems like from out of some Hollywood feature movie. No, it describes the lives of some myeloma survivors, I read from the ACOR's multiple myeloma forum. These are "real" people, some of whom have been living with myeloma for 10 to 19 years. For some, the myeloma journey is short, if they have the aggressive kind. For those with slow-growing, and now with many new targeted drugs, myeloma can be kept in control and one's "expiration date" gets extended.

Someone said that after his diagnosis, he had mentally prepared himself, his family and friends for an early termination, said his "good-byes", asked for forgiveness, written his will, ticked off his "bucket list", but his good doctors kept him alive longer than expected, he felt embarrassed after saying all the farewells that he is still around! True, many of us go through similar emotions and reactions.

One long timer mm survivor (19 years) had this to say, quoted below. I feel very encouraged after reading her post and realised that my 3 years is really nothing compared with the many people like her who have been courageously living with myeloma - gone through the many instances of CR (complete response) and relapses. This is the reality of myeloma. You wonder whether it is one's good fortune or misfortune, sometimes you want it all to end, better sooner than later. Sometimes, you feel quite good, your quality of life seems normal and you want to live on, as long as possible! and then when you get news of relapse, your world falls apart... yet again.

For some, the effects of myeloma mean a life with severe pain and organs dysfunction and for others, the distress caused by the drugs administered can be just as challenging.

I find BB has described well how best to live with it and not allow this dreadful illness take control. From these "experienced" survivors, I am learning to ride the waves.

She reminds me to be real, to face my fears, to allow room for my emotions, not to despair, not dwell in self pity but to get on and live well....IT IS POSSIBLE...

"Cancer changes our landscapes. We've been betrayed by our bodies and the world looks very different. Each remission is a joy, each relapse means redefining what I can do. After a while, I've learned to ride the waves. Some have been bigger than others, but I've learned that I am a survivor and that life will indeed go on....

Some folks feel that they have to be stoic no matter what, but to me, that robs us from being real. We ARE scared from time to time; we ARE angry that life has dumped misery at our doorsteps, and we ARE, at times, utterly terrified.

It's tough to remain "strong" through all that myeloma brings with it. I'm not a big fan on dumping our crap on everyone we see, and that despite our pain, we do need to get on with our lives. Living well is the best "revenge" we can take for myeloma....

Yes, we CAN and I hope folks will learn to live with myeloma and not worry too much about dying from it. That's the sadness....to let myeloma take over one's life. Especially now that myeloma is becoming a chronic illness for so many of us, our "expiration dates" keep moving longer and longer.

The message is to keep hangin' in there, be strong, and allow yourself periodic moments of weakness. We are, after all, human beings. If we are not kind and gentle to ourselves, we will forever feel "guilty" by not living up to our own standards of how we "should" behave.

The sun will come up every morning. For what it's worth, I learned a long time ago that usually, I have to get up and get on with the day. I truly don't know how else to live."

For me, I know that I can find strength from our compassionate GOD, our Ebenezer. He gives me my daily bread (of strength and endurance), my beloved family (especially my devoted husband, whose love and affection is exemplary) and my community of caring and kind-hearted church friends. How does GOD show His love? through all these whom He has surround me with. From the Bible we can find the needed comfort and peace to persevere. So therefore... "open for me the gates of righteousness, I will enter and give thanks to the LORD" ps.118:19